Vasculitis Awareness Month: Day 2

Already behind. Day 2 of Vasculitis Awareness Month. This is my daughter and a family friend visiting me at the hospital my last stay.

A dear friend and my youngest daughter visiting me at the hospital. ❤️

For those who don’t know, my first husband passed when my other daughters were kids. My biggest fears are raising another kid without a dad, or leaving my kids without a mom. Every single night in the hospital, I think, “Wherever my kids are now, without me, this is what their life will be like when I’m gone.” I’ve been praying just to make it to this youngest one graduating high school, and we are only five years away!

But those nights are never easy. Planning for when you’re gone is never easy, even when you’re not sick, or terminal, like my late husband and a friend I have now. But it’s something we should all do. It’s just harder when your mortality is so IN YOUR FACE.

I’ve been sick since I was a kid, so I’m completely used to the medical environment. That gloves she’s wearing? Every single time somebody is in the hospital, we blow up a glove and make a face out of it with a mohawk. The thumb is the nose. My dad started this when I was a kid. I didn’t have vasculitis as a kid, that I’m aware of Karen but I have always suffered with severe allergies and asthma and spent my fair share of time at the Kinder Clinic in Germany and traveling to Philadelphia’s Children’s Hospital from New Jersey. I’m used to getting poked and prodded. Remember that for my next post!

I still remember taking pictures of my late husband. Pictures like this are hard. They are bitter sweet. I adore them, but they are also reminders that one day they could just be memories. My late husband had the misfortune and the luxury of knowing what was going to happen. I still struggle with not knowing whether that’s better or worse than a condition that can take you out at any moment without warning. I really don’t think there is a better or worse. They all suck.

So in the meantime, we blow up balloons out of gloves and laugh as often as possible, and when laughing doesn’t trigger my asthma. (Rest assured I delivered home supplies of nitrile gloves to doctors I knew when they were in short supply. Discuss just before Covid. Isolating actually kept me fairly healthy and out of the hospital for an entire year.)

We do the best we can and ignore the people who don’t understand when we have to ration our energy. That’s OK. They don’t have to understand. But it means a lot when people do. Thank you to my friend who took time out of her schedule to bring my kid to see me. It meant more than she could ever know.

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